Monday, January 28, 2013

I found this amazing post from an "Unknown Author" thanks to a reader found the original author Jess Wilson shared on my facebook page. I needed to keep it in a safe place as it is written so well of the journey with my daughter. It made me return to places in my head and tears fell of the struggle and the joy she has brought me. I wish I had had someone to show me something like this when I began our journey. (Here is her original post as I do want to credit her with this fantastic piece. https://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club

So I am sharing it and keeping it on my Blog to not lose it. I share it for those who need a advice from someone who has walked the walk before them. I share it with love ....
Anny

(From an Unknown Author (Jess Wilson) shared via Facebook)

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world,
you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I
remember the coarseness of its fabric on my skin. Like raw wool in the
middle of the desert. You see, it was mine for a time.

I never
would have wanted to pass it on to you, my love. I remember so well
suffocating under the weight of it, struggling for breath, fighting to
throw it off while wrapping myself in its awful warmth, clutching its
worn edges for dear life.

I know that it feels like it’s
permanent, fixed. But one day down the line you will wake up and find
that you’ve left it next to the bed. Eventually, you’ll hang it in the
closet. You’ll visit it now and then. You’ll try it on for size. You’ll
run your fingers over the fabric and remember when you lived in it, when
it was constant, when you couldn’t take it off and leave it behind. But
soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep
learning curve. I know it looks like an immovable mountain. It is not. I
know you don’t believe me, but step by step you will climb until
suddenly, without warning, you will look down. You will see how far
you’ve come. You’ll breathe. I promise. You might even be able to take
in the view.

You will doubt yourself. You won’t trust your
instincts right away. You will be afraid that you don’t have the
capacity to be what your baby will need you to be. Worse, you’ll think
that you don’t even know what she needs you to be. You do. I promise.
You will.

When you became a mother, you held that tiny baby
girl in your arms and in an instant, she filled your heart. You were
overwhelmed with love. The kind of love you never expected. The kind
that knocks the wind out of you. The kind of all encompassing love that
you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he
crawled right into your heart. He made room for himself, didn’t he? He
carved out a space all his own. Suddenly your heart was just bigger. And
then again when your youngest was born. She made herself right at home
there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t.
You’ll find some that want to get it and some that never will. You’ll
find a closeness with people you never thought you had anything in
common with. You’ll find comfort and relief with friends who speak your
new language. You’ll find your village.

You’ll change. One day
you’ll notice a shift. You’ll realize that certain words have dropped
out of your lexicon. The ones you hadn’t ever thought could be hurtful.
Dude, that’s retarded. Never again. You won’t laugh at vulnerability.
You’ll see the world through a lens of sensitivity. The people around
you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you
can’t handle reading. You’ll feel guilty that they’re sitting by the
side of the bed unopened. Take small bites. The information isn’t going
anywhere. Let your heart heal. It will. Breathe. You can.

You
will blame yourself. You’ll think you missed signs you should have seen.
You’ll be convinced that you should have known. That you should have
somehow gotten help earlier. You couldn’t have known. Don’t let yourself
live there for long.

You will dig deep and find reserves of
energy you never would have believed you had. You will run on adrenaline
and crash into dreamless sleep. But you will come through it. I swear,
you will. You will find a rhythm.

You will neglect yourself.
You will suddenly realize that you haven’t stopped moving. You’ve missed
the gym. You’ve taken care of everyone but you. You will forget how
important it is to take care of yourself. Listen to me. If you hear
nothing else, hear this. You MUST take care of yourself. You are no use
to anyone unless you are healthy. I mean that holistically, my friend.
HEALTHY. Nourished, rested, soul-fed. Your children deserve that
example.

A friend will force you to take a walk. You will go
outside. You will look at the sky. Follow the clouds upward. Try to find
where they end. You’ll need that. You’ll need the air. You’ll need to
remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no
matter what the timing, will be cause for celebration. Every baby step
will be a quantum leap. You will find the people who understand that.
You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore
your faith in humanity. You will cherish the teachers and therapists and
caregivers who see past your child’s challenges and who truly
understand her strengths. They will feel like family.

You will
examine and re-examine every one of your own insecurities. You will
recognize some of your child’s challenges as your own. You will get to
know yourself as you get to know your child. You will look to the tools
you have used to mitigate your own challenges. You will share them. You
will both be better for it.

You will come to understand that
there are gifts in all of this. Tolerance, compassion, understanding.
Precious, life altering gifts.

You will worry about your other
children. You will feel like you’re not giving them enough time. You
will find the time. Yes, you will. No, really. You will. You will
discover that the time that means something to them is not big. It’s not
a trip to the circus. It doesn’t involve planning. It’s free. You will
forget the dog and pony shows. Instead, you will find fifteen minutes
before bed. You will close the door. You will sit on the floor. You’ll
play Barbies with your daughter or Legos with your son. You’ll talk.
You’ll listen. You’ll listen some more. You’ll start to believe they’ll
be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of
different theories and practices. You’ll talk to parents and doctors
and therapists. You’ll take something from each of them. You’ll even
find value in those you don’t agree with at all. Sometimes the most.
From the scraps that you gather, you will start to build your child’s
quilt. A little of this, a little of that, a lot of love.

You
will speak hesitantly at first, but you’ll find your voice. You will
come to see that no one knows your child better than you do. You will
respectfully listen to the experts in each field. You will value their
experience and their knowledge. But you will ultimately remember that
while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are
the very sweetest of life’s nectar. You will drink them in and taste
and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her
boundless love. She will know that she is accepted and cherished and
celebrated for every last morsel of who she is. She will know that her
Mama’s there at every turn. She will believe in herself as you believe
in her. She will astound you. Over and over and over again. She will
teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.

Anny's Postscript:

And continues to amazing me and I continue to learn from her as she grows in the interdependence of adulthood with all of her challenges. She is my heart. I am so blessed to still have her in my life. God gave me a miracle. I have been blessed and changed by my daughter, my teacher, my heart.

Friday, January 25, 2013

I know this one well. Our house is a menagerie of furry friends who help my daughters with unconditonal love and trust. For Dee the rescue of her Golden Retreiver/Yellow Lab Holly helped to make sense of her history. For Becca they offer comfort through all the pain and loneliness of her Noonan Syndrome.

Recently we have the opportunity to order t-shirts to support the new Rasopathy Foundation. I love the new logo that proudly reads "I Love Somebody with Noonan Syndrome". It caused me to get thinking that maybe I needed to get another t-shirt that in honor of my children with Fetal Alcohol Spectrum Disorders.

I searched, I found I love somebody with autism, I found almost every other syndrome or disorder. But
when I searched for fetal alcohol, all that came up were drinking t-shirts. Enough said....

Having Fetal Alcohol seems to be a dirty or shame based syndrome. Parents and families proudly wear their autism tshirts, down syndrome tshirts, all sorts of genetic syndrome or disability tshirts, but would anyone wear I love somebody with Fetal Alcohol Syndrome in public? I would. I am proud of my children, but I have an advantage, I did not cause my children's lifelong disability. I understand why some parents will focus on their children's developmental differences to get special help instead of admitting where it came from, because of the blame society places on them.

It is much more accepted to have autism spectrum disorders, ADHD, bipolar disorder than to have Fetal Alcohol Syndrome or any of the FASD spectrum. As long as it is no ones fault. But it is not my children's fault, they were victims, victims of prenatal alcohol exposure. They have no voice, no rights to be born healthy. They were just a fetus and a fetus has no rights. But my children will pay a life-long price.

Tonight I was just thinking.... and I will proudly wear an "I love somebody with Fetal Alcohol Spectrum Disorders". Who will join me? First I need to get Jodee to make a logo and then get some t-shirts printed up. Maybe it will be the first step in destigmatizing FASD.

I bought Becca her own shirt to proudly proclaim "Rockin my Designer Genes". Maybe someday my children with FASD will be able to proudly wear their own shirts and be understood by our society without shame.

I was inspired, after 23 years of walking this life I know my job well. I have written our lives but still nothing can explain "just" how complicated it all can be. Trying everyday to do all we can for our children all the while managing the complexities of the differing places that work with our children. I knew that a piece of paper was not going to be able to fit my Care Map. The little guy's easel became my tapestry for my ongoing work in progress. (This is not done, but just the beginnings).

I started my care map not just for my daughter Becca now 23 with a severe form of Noonan Syndrome, but my adopted daughter Detamara with Fetal Alcohol Syndrome 20, and our latest soon-to-be permanent addition to our family known right now until finalization as "Little Guy" who has an unknown genetic disorder and full Fetal Alcohol Syndrome. I left off the chart the launched 4 with FASD who at times call on Mom to put out fires, offer solutions, advice or prompt on how to manage their own care charts. Just another part of my neverending juggling act.

I drew my hearts putting into each my most precious gifts names. Then I began with breaking it down into Medical, Systems/Financial Supports, Then school and all. The ovals each contain one place/specialist/one program for each of my kids.

What it doesn't show are the complexities of how each program is garnered by what funder, what it all takes to get and keep those funding streams, or qualify for them. How they all interface and the beaucratic/insurance red tape that frustrates me more than anything. Then all the countless phone calls, hours running, documentation, follow-up. Then add the fighting to get the recommendations prior authorized, get those recommendations to the appropriate providers and then continually following up on all the beaucratic red tape. We as parents have to learn the rules and regulations and the "systems" for each of the programs are kids are involved in.

We have to become experts in balancing all these balls all the while juggling our children/adults with special needs and try to maintain some sense of normalcy in our lives, much less trying to manage a house, relationships with spouses and other children. Is it any wonder why families fall apart under the stress?
Too much, yes sometimes it is too much, we step back for a moment, find a parent or a friend in this world who understands, take a mini-respite and we find the strength to continue on doing it to the best of our ability because we have to.

I have learned to become an expert in Insurance regulations, Medicaid law, IEP rules and regulations, long term community supports, Occupational therapy, Physical Therapy, Nursing skills, ABA therapy, care coordination and at times even had to unofficially practice law when no disability rights organizations knew how to help me. I had to learn to read medical jargon, recite it, understand it, sometimes, knowing more about my child's condition than the professionals. That is a scary place to be. I do not want or will ever get used to that responsibility.

Many people ask how I have done it. You just do it. I lived and grew through the chapters of Tiny Titan, One Small Gift. Continued to grow through the Chapters of Tiny Titan, Miracles by the Dozen, and still learning as I move on to living the next book, Tiny Titan, One Small Surprise. It was out of necessity, one step at a time. I learned to get my PhE. My Doctorate in Becca. I have since gotten my Doctorates in DJ, Shay, Deangelo, Delonzo, Detamara, and now my latest degree with Little Guy.

Does it get easier, probably not. You learn to cope, you learn the systems, you learn that you are the experts in your children and how to play the game. But after the fact, I doubt myself. I replay the appointments, meetings, etc. thinking did I say that right, were they listening, did they understand.

What I have learned in 23 years of parenting my children.

I know them, I may not know why or how, or what it is, but I have learned to trust my Mom instinct. I am the expert in my children.

I find support, I find listening ears and knowledge in my extended special needs family. Though we may never meet in person, we are friends of the heart as we walk the walk together. We help keep each other sane with venting, brainstorming and celebrating the milestones.

I know that living under the microscope of all these professionals, systems, and having them in our lives are necessary for my children to get services, supports and flourish.

I know that the providers, systems, etc. expect perfection, I cannot forget an appointment, I cannot be human and not follow up on something. I cannot be tired. They can forget and not be perfect, but parents are held to a higher standard.

This job is not easy... it is close to impossible, not because of my children, but because of the complexities of the care systems with the funding stresses, ever changing rules and regulations and just all the barriers that come before us to get needed help. And it always takes way too long and takes too much energy and causes way too much frustration.

I know that I will do anything for my children and will find the strength to do whatever is necessary despite my fears, inadequacies, and shyness. Do not mess with a Mother on a Mission.

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The Tiny Titan

Our Miracle

Tiny Titan, Journey of Hope by Ann Yurcek

Mom's Choice Award Winning Non-Fiction

Our Story

In 1989 our youngest daughter Becca was born with a rare genetic disorder, (Noonan Syndrome) and while she struggled to survive, our family tumbled into poverty. With Six children we had to live below the poverty line to qualify for help to cover her million dollars in medical bills.

Becca never gave up and neither did we.

When my husband lost his job due to Becca's insurance issues, he returned to school. It is never too late to change careers. Two years of undergraduate coursework and four years of medical school were supported by delivering thousands newspapers and thrifty living...and prayer.

In the spirit of giving back we went on to adopt five siblings separated in foster care. Leaving our home of twenty years, two families who both knew adversity moved onto the Hope of a new life 600 miles away to begin the Journey through Residency and becoming a New Family. Along the way we soon discovered that our newest children would be diagnosed with Fetal Alcohol Spectrum Disorders and challenges from their histories of abuse and neglect. My strength would be tested, my advocacy skills honed to help my children with special needs. All the while bargain hunting and struggling to feed our family of thirteen on residency pay and prayer.

Our Tiny Titan showed us the gift of today and to never, ever give up. Our family CHOSE to not become a statistic of families facing catastrophic illness. We learned to live frugally, stretch a dollar, and find happiness with being together. I learned to navigate the complex world of advocating and finding help for my children with special needs. Instead of feeling hopeless, we found strength in turning the negatives into the positives.

My children are now all nearly grown, our family no longer financially struggles. My job is never dull, the kids keep me busy, there is always a battle or some barrier to cross to help my children. My husband is now a surgeon, my children make me proud as they live their lives. I have a new gift the enjoyment of being a grandmother.

With my book now published, the kids grown, I have a new opportunity... To write again... and share in the special needs world and take care of our newest addition to the family, McKellan Edward Yurcek was offically adopted April 16, 2013.